Saturday, January 26, 2013

A Plea on behalf of all Aspies: Keep Asperger's Syndrome diagnosis in the new DSM5

The American Psychiatric Association is soliciting comments on its proposal to eliminate Asperger's Sydrome as a diagnosis in the DSM5, the diagnostic bible of the profession. It wants "autism" to cover it.  But I do not think autism fits all, and certainly not people like my brother Loren. Many people will fall between the cracks, as he did for so many years.  Please write the APA if you think the Asperger diagnosis should stay in the DSM5.  Below is my letter, which you can take from as you see fit.  Thanks!

Dr.Dilip Jeste, MD, and the Board of the American Psychiatric Association
1000 Wilson Blvd. Suite 1825
Arlington, VA  22209

Dear Dr. Jeste and Psychiatric Association Board:
My brother Loren Curro, who died at 63 two years ago, was a late-diagnosed Aspie. He lived with “a problem that had no name” all his life, and suffered for it. No diagnosis, no intervention, no help.  That’s why I pray, with millions of others like my brother, that the Psychiatric Association does NOT eliminate Asperger’s Syndrome from DSM5, as proposed.    

Loren wasn’t diagnosed until he was 55 years old.  I enclose his autobiography, An Asperger Journey, published 3 months after his death in 2010, so he can speak for himself.  My sister Andy and I say that he died from Asperger’s, in the sense that as brilliant as he was in some things, he couldn’t connect the dots, recognize the symptoms, tell his doctors or us about them, and save himself. 

Eliminating the Asperger diagnosis from the DSM5 would mean people like Loren, with his constellation of symptoms, would be left to their own devices and might not be diagnosed at all. My brother went to doctors, psychiatrists and psychologists all his life: Even in his fifties, he was diagnosed with schizophrenia, bi-polar disorder, everything but autism, and never Asperger’s (see Chaps 8-11).  He never had any intervention as a child, a teen, in college, as an adult. He was socially awkward but very smart.  He wanted to be accepted, and he tried mightily to work on his behavior and find his identity and purpose,  joining many environmental and political causes that made him friends. 

But Loren was different, and he knew it.  The Asperger diagnosis at least gave him a handle on his behavior and thinking processes.  The best thing about it was that he could disclose this diagnosis, which helped him understand himself, and others understand him better.  And that is really the heart of the matter: Not the inner sanctums of a profession, doctors talking to doctors, researchers to a few other researchers, but the social reality of day-to-day living and related SOCIAL issues that go along with it.  

Without the Asperger diagnosis people like my brother will once again be left behind, by the medical profession, the insurance companies, schools, state and federal agencies, and other social services.   Public awareness is critical for treatment, intervention and understanding.  Take away the Asperger’s diagnosis, finally in the public domain, and we’re back to the 1950s and 60s, when doctors didn’t recognize an Aspie diagnosis and blamed mothers (including our mother) for Loren’s disorder.

On behalf of my brother and millions like him, leave the Asperger's diagnosis in the DSM5. Please, “DO NO HARM.”  Thank you,

Francine Curro Cary, PhD 
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